Rethinking Dementia: BanBPSD

It is the final day of World Alzhimers Month 2018, and I decided to end the month by saying I am tired! Go figure… I helped orchestrate 30 blogs on the DAI website, as part of their campaign for this month, #Hello blog/vlog series. Please follow the link and read them, if for no other reason than to understand what it is like for individuals from so many different countries! Sadly, these blogs have also encouraged the ‘dementia-doubters’ to doubt those of us brave (or stupid) enough to be public advocates us even more, discussed cleverly by George Rook last week. But I will write more about the dementia-doubters in December!

Back to the campaign or quest started recently by six professionals including me to ban BPSD, and one which others have joined us, and more are joining every day, I believe whilst we haven’t convinced the whole sector yet, there is definitely some ‘uncomfortable wriggling’ going on by those too heavily ‘invested’ in the term Behavioural and Psychological Symptoms of Dementia (BPSD).

In part inspired by my blogs on the topic, I’ve been asked by a colleague in a department of my own state government to provide an alternative to BPSD. I’ve had a request from another national expert group as well, and I think this in itself, is progress, as not that many years ago, doors were metaphorically slammed in our faces for even suggesting BPSD was doing harm. This is part of the email request:

I am really enjoying reading your thoughts about changing our language around dementia, especially about BPSD. I’m hoping that you might be able to give me some advice please on how, in our work of responding to complaints about aged care, we can promote more appropriate language.

I am about to send out to my team (clinical advisors… ) a request that unless they are directly quoting from a clinical document, they no longer refer to BPSD. But of course I need to give them some guidance about what to replace this term with.

We had a really good conversation about it, and as there is no real urgency, I am working on a response, and appropriate alternatives. I consulted with my #BanBPSD Brains Trust, and hope to have something to my colleagues soon.

When I said it would not be evidence based, especially in such a short time frame, we both agreed that was okay, as neither is BPSD!

The vested interests behind BPSD are now very publicly known, especially as so many of us have continued to highlight this fact. Susan Macaulay highlighted it again in a recent excellent blog of an article she published in 2016, which I recommend reading in full. I have highlighted it again here, just in case you missed it:

The International Psychogeriatric Association (IPA) launched its educational pack on the Behavioral and Psychological Symptoms of Dementia (BPSD) in 1998. Henceforth, the IPA proclaimed that “agitation in PLWD” would be known as BPSD; thus:

“The term behavioral disturbances should be replaced by the term behavioral and psychological symptoms of dementia (BPSD), defined as: Symptoms of disturbed perception, thought content, mood or behavior that frequently occur in patients with dementia. (Finkel & Burns, 1999) [8]

Essentially, research tools such as the CMAI were morphed into a clinical tool – BPSD. It’s also noteworthy that the IPA’s BPSD Educational Pack was produced under a grant provided by Janssen-Cilag,[9] a subsidiary of Johnson & Johnson pharmaceuticals, the manufacturer and distributor of risperidone (marketed under the brand name Risperdal™), subsequently sold as a treatment for BPSD.

To further highlight the depth of the problem of pharmaceuticals companies, largely due to what I see as serious conflicts of interests, alongside the vested interests of share holders, I now turn to some of the blogs by Dr Peter Gordon, a psychiatrist, poet and artist (and a dear friend) who lives and works in Scotland. Peter wrote an article on 3 August 2017, ‘The medical untouchables’, where he shared an opinion piece by Dr Des Spence published in the British Journal of General Practice. In his own response, he also quoted three related articles he had written previously. I also recommend you read these articles;

Three recent posts by me demonstrate the scale of competing financial interests in medical education in the UK. If you have a moment, you should have a look. Perhaps you might then share the worry that I have about this matter:

In blog 1. from this list above, Peter writes” I have previously petitioned the Scottish Parliament to consider a Sunshine Act for Scotland which would make it mandatory for healthcare workers and academics to declare potential financial conflicts of interest on an open public register. The pharmaceutical Industry has this year increased payments to healthcare workers and academics for ‘promotional activities’ – from £109 million up to £116.5 million today.

Finally in the same post, Peter says: However, it remains the case that we cannot scientifically consider the scale of potential biases that financial incentives may bring to the prescribing of medications in the UK. This is because we have an incomplete dataset. This is surprising given that we do have longstanding evidence that exposure to industry promotional activity can lead to doctors recommending worse treatments for patients.

My research into what is publicly available on competing financial interests in key opinion leaders has left me wondering how much of what we term Evidence Based Medicine (EBM) might actually be considered as Industry Biased Medicine? A decade ago, Ray Moynihan was asking the same question and shared in the BMJ his examination of the “role of influential experts paid by industry to help educate the profession and the public.”

About now, you may be wondering what on earth do Peter’s blogs have to do with the campaign to #BanBPSD?! It is simple really. When there are competing interests, there ultimately are also conflicts of interest, and patients never come out on top!

When it is Industry Biased, best practice and patients will always be the losers.

During October, I hope to post a list of all of the articles and books relevant to this topic in one blog, for us all to be able to easily find and read them. Frankly, if we keep doing what we’ve always done, our most vulnerable populations (our elders and anyone with dementia requiring care) will continue to be abused, ignored and seriously neglected.

Bless you dear Kate, especially for your ongoing courage with all this. My hope is that my research will also drive more holes in the BPSD coffin, if you have not already done that my the time I get to publish. You may be interested to know that one of my supervisors has suggested dementia-associated neuropsychiatric symptoms instead of BPSD. I suspect you and your brains trust will do better than that. I would love to include whatever term you decide in my PhD thesis. If you are looking for another person on your brains trust, I would be honoured to be part of it – I also understand if you feel you have enough people already.

You are truly an amazing woman. I saw you first while engaged on a Wicking Institue dementia MOOC. I am currently engaged on a Futurelearn MOOC where I have referred to your blog. I will promote you and your work wherever and whenever I can. I am glad to be one of your troops in the RDA….that’s Rethinking Dementia Army, if you don’t mind me thinking of it in that way.

Kate you are remarkable in your extraordinary ability to communicate to the world how cognitively aware assumptions are just not acceptable when discussing people living with dementia.
To committ to a blog a day for 30 days is beyond most of us and thus it is even more incredible and commendable that you churned out so much extraordinary information. You blow me away and all I can say is you are an absolute legend.
The only experts regarding dementia are the voices of truth.
That is people living with dementia.
I applaud you for your courage in dispelling every negative myth and unfair stereotype created to label and judge people living with dementia.
How dare humanity arrogantly perpetuate falsehoods against other human beings because of a medical disability/condition. Brutal!!
Or dare to doubt you when you live well with dementia and are courageous enough to have a voice.
Time to rethink dementia and expose what is real.
It’s time the power of your voice was listened to.
You have my support without doubt and I am super proud to be one of the 6 #BanBPSD warriors. Long may we fight together to uphold the rights of people living with dementia.
My hero always.
With love and salutations my dear friend.
Leah. Xx

That’s awesome news – yes its always exciting when we can see change happening and know that out voices are being heard.
I am so so glad that you are feeling so positive GF – you deserve it and you deserve to be applauded for your never ending belief!!!!
Inspirational!!
Lx

Tragic truth… not overly funny when we or someone we love is on the end of it! Hence our campaign. We have a growing group of supporters too, so I’m TOB on how to manage commutations. Maybe we revert to the Google Drive?
Glad you enjoyed the #Hello series too. X

Loved the #Hello blogs, this month, Kate. Great to find out a bit about everyone.

Keep up the good work on the BPSD front. Had to pull up one of the nurses on the Central Coast Alliance Committee at the last meeting, when she used the term, “A BPSD Client!!!!” Was pleased that a number of the team re-inforced what I had to say. About 80% appear to be enlightened, which is a good start.